Our day began with pouring rain, continued with gray skies but we emerged with sunshine!
Literally and figuratively.
We literally drive in to Milwuakee with scary, temultuos downpuring of rain. When we arrived, my car died in the valet and we were 45 minutes late. It took us over 2 1/2 hours to get there. Rarely does it take more than 2 hours to get to Milwaukee. We race up to the Herma Heart Center and we missed our spot for the ECHO. It was at 9 and we didn’t get there till 9:45. Sigh.
We wait in the waiting room and deal with the car situation. We’ll have it towed from the Valet and while we had our appts lined up, we could get it fixed. Chris and Ethan to the rescue.
A kind nurse came out into the waiting room to tell me that Carol, Dr. Cava’s nurse, was trying to rearrange our day. She had called to GI to get that appt moved from noon to earlier so that we could do cardiology appts later. Just reverse them.
However- when Carol called she found out- The GI dept. didn’t. have. us. scheduled. Sigh. Gray days.
Long story longer- thanks to Carol we had our long day extended longer but were able to fit everyone in. We started with seeing her and getting the EKG. We saw Dr. Cava briefly and chatted a bit about a few concerns.
We ended up waiting for the GI doc, Dr. Martinez, for 3 hours. Yes 3 hours. We were an “add on” because they messed up our appt and Dr. M was, of course, way behind schedule. Sigh.
I love love love CHW but I have some suggestions for them as far as coordinating all of these appts. More about that later.
1. Heart function is good. Not great, but good.
2. Rythm is good.
3. Her heart is still way enlarged but “normal” for HLHS anatomy. The fluid that has built up around her heart over the years is finally subsiding.
4. Sats were great- around 92. Heart rate about 120. Both perfection!
5. The valve that was the cause of severe backwash before the fontan is much better. Dr. T made repairs during the fontan procedure and the backwash is down to just mild. Dr. Cava said the valve isn’t pretty… meaning lots of suture line and scar tissues but it’s functioning. For some reason, that stung a little.
6. Her fenestration (hole placed to relieve pressure) is working properly. At some point- either in 6 months or 6 years- or never- it may need to be closed with intervention. This would just be a cath procedure.
7. He did take her off the Aldactazide. She has been on this med since after her Norwood.. almost 4 years. He contemplated for a while but said we need to try it. This is a diuretic and it has other benefits to reshape the heart. Risky. We are supposed to watch for increased respiratory rate. All other meds stayed the same- Enalapril, Coumadin and lansoprosal. I was so excited to get down to 3 meds… but…
All in all Cards was all good!
I almost left during the day because I was so frustrated but I am so glad I waited. Dr. Martinez was so nice and so knowledgable. He helped me understand her feeding problems A LOT!
1. Gabi has lost 2 lbs since Dec. 2012. She was 29 lbs in the summer of 2012 and she is now down to 26 lbs. 3 lbs is a lot of weight for a little one to loose. All depts agreed that something needs to happen to help her gain weight.
2.Gabi is currently on a formula called Pepiasure Peptide (a low fat formula) to avoid effusions. That is explained here. Usually the post fontan kiddos are only on a low fat diet for a few weeks after surgery but knowing Gabi’s history, Dr. Cava wasn’t taking any chances. He FINALLY gave the go ahead to put her back on regular Pediasure! I met a new nutrionist and she went through a long term goal for Gabi and step by step procedure. I am not too happy with this new plan because we were in such a groove with her feedings and now it’s changing, but I guess the groove wasn’t exactly working- so I will do whatever she needs. “They will be done”.
- In about 2 weeks, the formula should be changed over. It is a gradual process.
- We need to get her off nighttime feeds- this completely affects her metabolism, stomach lining and interferes with any potty training efforts.
- We need to start using the pump during the day for longer, more stable feedings compared with freehand syringes. The goal is to get her to do 5 feedings at a rate of 255 ml/hour. This will not be easy because we need to keep her in her seat for an hour at a time hooked to the pump, 5 times a day. Yikes. And that rate is really fast for her. At night, her rate is at 46 ml/hour. Right now, I give her 60 ml’s in a syringe an hour!! I have my work cut out for me.
3. Dr. Martinez started her on a medication called cyprheptadine. Back to 4 meds :). This is actually a med for allergies, similar to Benadryl. But the side effects of the drug is what will benefit Gabi. The side effects are crazy. The drug will help her stomach muscle fibers stretch and constrict much more efficiently. Right now, because Gabi is mostly fed liquids, the stomach doesn’t have a chance to stretch like it does when we have a big meal. This will help trigger the brain function to tell her she is hungry!! Amazing. Because her stomach will not be stretched and constricted so harshly, she will be less gaggy and more likely to swallow her food!! It takes about 2-4 weeks for these effects to kick in, but I am so excited for her!
4. Dr. Martinez did mention being referred to the feeding clinic but he wants to get her off nighttime feeds first and get her stomach working more efficiently.
Baby steps in the right direction!
We never made it to Neurology. Next time. Last time I was there, they looked at Gabi’s shunt for about 10 seconds and said.. call me with problems. So, I will get it checked… next appt time.
Oh right, the car you ask??? I forgot the put the car in park… doh!
After all the waiting and waiting some more, we finally got home at about 8pm but it was nice to have daylight… even sunshine on our way home. We left the house at 7am that morning. Gabi and I were absolutely exhausted. still are. But we came home to Daddy’s birthday with lots of hope for our sweet Gabi!